Friday, November 20, 2015

New slant board for Cole - What a difference!

Just a few quick updates for those of you who read the blog and don't see it on Facebook.  We had the orthotists heat and stretch Reagan's brace.  He also added a large pad inside to reduce the rubbing.  Night one she still went to bed with tears but SLEPT THROUGH THE NIGHT!  It was SO nice...for both of us.  Unfortunately, every night since she's woken up again irritated (sometimes uncomfortable or itching).  I've decided with the short week next week we're going to try to see if time will help adjust to the brace.  And with several days at home, we may do some daytime work with the brace so she can get a good night's sleep.  We will go back to see the orthotist after the holidays if necessary.  I'm hoping we get some insight when we see the Physiatrist on December 1st, however.

I wanted to share a quick poem I wrote one night after putting Reagan to bed.  We had just read a Dr. Seuss book so he was on my mind as I thought about Reagan struggling to fall asleep.

"One sock, two sock, pink sock, blue sock. Tall sock, short sock, half sock, whole sock. No sock too. I will throw this brace at you. No, no, this brace will not do. I don't want this brace and I do not want you. 
On brace, off brace, red spot, hot spot. Eight days now, and I say that's enough. I do not want this brace, it just will not do. I will cry each night I say. Until you make this brace go away. I will wake you one time, two times, four. You will not sleep any more. Not if I have to sleep this way.
What do you say? This brace must stay? Oh what will I do? I do not like this brace and I do not like you. You say you love me, yes you do. But why do you make me hurt this way? I just want it all to go away...
You will wear this brace I say, because you need to, it's the way. You will wear it, yes that's true. Even though you don't want to. You will wear it, yes you will. Because you know I have faith in you..."

In other news, Cole has a new slant board that he's using at school.  I can't tell you how much I appreciate our new TVI (Teacher of the Visually Impaired).  It is amazing to look at these two pictures and see what a difference such a small adaptation can make for Cole.  I am constantly concerned about back pain since he is always leaning over books or art projects. Although he has been using a 3-ring binder to lift content, it wasn't large enough for art projects and wasn't able to be as high as this one.  As you can see in these pictures, in the top picture his back and neck are bent to lean over the book to count the apples on the character's head in the Dr. Seuss book.  In the second picture, he is still able to count the apples without having to lean toward the content.  This fancy new clipboard has three settings so he can also use it to write.  Anyone want to guess how much a plastic stand like this costs?  Yup, $200.  Wow, I'm in the wrong business.  The good news is that he will be able to take this to Kindergarten with him since it was purchased for him, not for the classroom.  I'm super excited about this new tool for Cole!

I'm also excited to share that Cole was on the front page of the Loudoun County Public Schools webpage today!  Cole was asked to come to his friend Sammy Child's Home Economics class (now called Family and Consumer Sciences).  She was inspired by our visit to Ronald McDonald House over the summer and used that inspiration to propose a class project to make blankets for Ronald McDonald House.  She invited us to join her to present the blankets to a representative from Ronald McDonald House and share what receiving a blanket meant to us.  What a great cause and a special young lady who is helping others! For the full article go to or click on the image below to make it larger and read it in full.

Friday, November 13, 2015

New AFO and a New Low Vision Specialist

This week brought with it two appointments.  First, we went to pick up Reagan's new AFO from Nascent Orthotics on  Monday.  Unlike her last brace, this one extends all the way to her knee.  And unlike the last one, she will wear this only at night.  Although I thought night wear only was a huge "selling factor" this brace is very hot since it has solid plastic up to the knee.  It also has four velcro closure straps.  The goal is to increase the tightness of the velcro each week to decrease the angle of the ankle, therefore stretching the calf into a position that the brain does not currently allow.  We talk about the importance of reducing her tripping and how we want to prevent her from getting hurt but in addition to being hot, the brace makes rolling over in bed tough since it gets caught on the blankets.  Sadly, she's cried every night because it's uncomfortable.  She also gets frustrated that "lefty doesn't work right." The last two nights she has also woken up at 2 and 3am telling me her leg hurts.  The first night I adjusted the tightness of the straps and that helped, but last night we removed the brace and her ankle was slightly red.  I've made an appointment for next week to have them modify the shape around her ankle hoping that will help.  Luckily we don't have to try to find shoes to fit this one and even better, insurance has covered it completely!  Doesn't look like $1,240 does it?

There are so many decisions over the last 6 years that I have doubted whether we are choosing the right path.  This is definitely one of those...but I try to remind myself that everything takes time to adjust.  And as with other parenting challenges sure to come, the popular decision isn't necessarily the right one.  But there is nothing more heartbreaking than to cuddle her through the tears wanting lefty to work right so we don't have to travel this journey.

This week also included getting a second opinion from Dr. Peyam Mojallal at Acuity Vision Care, a low vision specialist.  Cole is doing SO much better making it through long, exhausting appointments, but it's still very difficult getting a good gauge of his visual acuity. It was a productive appointment, but still disheartening watching him try to read the letters and realizing that he just can't.  He was unable to see any of the letters with his right eye regardless of size or distance to his eye.  He struggled with the left but he was able to see the letters.  The doctor also tested the use of two different magnifiers.  Unfortunately neither worked well since Cole tends to bring content closer to him and these need to remain on the reading material. Although we could retrain the behavior, he will then need to lean over the content which will not be good for his posture and could cause back pain over time.

He also tested a "loupe" which clips onto the glasses.  It works much like the magnifiers jewelers use.  When we clipped this onto his glasses and gave him something to read he said, "Wow, these words are huge!  This thing is cool.  I wish I had one of these."  We have decided to make the request to Loudoun County to purchase one and see if it helps him.  It will be something he could clip onto his glasses when he needs to read something that is small.

Unfortunately this will not be a good solution for doing school worksheets since he can't write on them while he's looking at them.  So the doctor will also be providing some suggestions for CCTVs and we plan to submit a request to Loudoun County to purchase one.  The one we saw at GMU is still high on our list of options.  Not only is the price for the ReadDesk very reasonable (only $800) it runs off USB so finding power in the classroom will not be as challenging since it could run off a laptop. It can scan, read, magnify, save and listen to any printed material. Although I'm discouraged that we need to move in this direction, I'm so thankful for a vision teacher who is proactively researching and advocating for our son.

I'm feeling very lucky that we only have one Nascott appointment (to adjust the brace) and a physiatry appointment to talk about using the brace and then we will be done for the year!  We are all getting very excited about celebrating the upcoming holidays!  Unfortunately Reagan told me recently that Santa is just a man in a costume.  So we've already visited the "real Santa" to give a tug on the beard and verify Santa really does exist.  We are very excited to carry the tradition and magic for another year!

Saturday, October 24, 2015

GMU Assistive Technology, Ophthalmology and Neurology EEG plan

It has been a few weeks since my last post and I have a couple updates.  First, I wanted to share a picture from our annual lantern lighting for Kendall.  It's amazing to me that it has been five years!  Although it is always a somber event for us, it is a good time of reflection and the kids love riding the ATVs, lighting a camp fire, eating a picnic dinner, lighting the lantern and this year we layed on the ground and talked about the stars and planets.  I felt very blessed Cole was able to see them - often he struggles in Sterling because the sky isn't as dark and the stars aren't as bright.  It's always amazing how beautiful the sky is at my
parent's house.

We had a great visit to George Mason University's Assistive Technologies Department this week.  I never really thought about the transition to college, but it's important for students who are visually impaired to have a point of contact to help them access their education like "sighted" students.  There are many challenges for visually impaired students - college is not just finding their classes and listening to lecture, it's also performing literature searches or completing labs using proprietary software.  All software companies are required to be 508 compliant so that students with vision or hearing impairment can access them.  This legislation came about with Section 508 of the Rehabilitation Act that requires all web content to be accessible even if you are visual or hearing impaired.  I have developed training that is required to meet these standards and it's critical for those who need the accommodation.  However, many students going to college use magnification software that is not necessarily compatible with the proprietary software that colleges use (most test with Jaws which is losing popularity).  So when students try to do a literature search with their magnification software it doesn't work properly since the testing the software company used may be different than the one the students are using.  For example, some software runs better on Firefox than Safari or Internet Explorer.

The Assistive Technologies Department at GMU not only supports these students in finding solutions that will work for them to access their education, but they also work with the professors who need helping learning how to adapt their material.  We learned a lot about what features are available in software and what hardware options are used for magnification. We were also able to see the magnification software and how it works and we were able to see a slick new CCTV.  It is portable and powers directly from a computer via USB so it doesn't need a power source.  This is important if we're talking about Cole using it in a classroom since outlets are not easily available.   This CCTV has a lot of features that could benefit Cole for his schoolwork.  The CCTV is called a ReadDesk and I would love to see the school purchase something like this for him.  Time will tell how hard it is for us to get something like this approved.  As far as magnification software, there are free software options that are not as feature rich as the ones that require a license.  Unfortunately getting justification for the license is difficult since there are free options.  Again, time will tell whether we are able to get the support we need.

This week we also had a visit with the Ophthalmologist, Dr. Jeffries for Cole's 6 month follow up.  I had a lot of questions since we hadn't seen her since visiting the National Federation of the Blind, George Mason University AT Department or the Low Vision Specialist.  I told her about his ongoing head aches and asked if his vision issues could cause the headaches.  She said no.  I also asked about Braille and she said she does not think it is necessary right now - luckily she is in agreement with Cole's TVI (Teacher of the Visually Impaired) so  we will hold off on learning Braille at this time and discuss it again in a year. There are several reasons for this decision: 1) learning Braille requires strong fingers to press the note machine and it will be very difficult for him physically 2) his eye sight is not degenerative so he won't lose what he has now 3) he is able to see as long as the text is enlarged so the CCTV in combination with a magnification software will help significantly 4) the optho doesn't think he will experience eye strain which is why NFB and DBVI (Dept of the Blind and Visually Impaired) originally said he should learn braille.  Overall she said he looks good and she'd like to see us back in 6 months.

In addition to opthalmology we also visited the neurologist, Stephanie Stavish this week.  I brought her my extensive spreadsheet tracking his head aches and she said that unfortunately there are no tests to determine what is causing them.  She said the primary cause in kids is either lack of sleep or dehydration.  She wants him drinking 40 oz of water daily.  I'm not sure how we are going to accomplish that, but we are going to try.  We are also trying to get him in bed closer to 7pm to increase his overall sleep.  Other than that she said he looks good and come back in 6 months.  If the headaches continue she recommended we consider putting him on a preventative medication, but we are hoping to avoid that.

The neuro was happy to see that Reagan is doing well, that the endo appointment went well and that we saw progress at Kennedy Krieger over the summer.  Luckily the neuro said Reagan's medication is at the right level for her weight so we don't need to go up again.  When I asked at what weight we would need to increase she said it may depend.  She suggested we repeat the EEG to determine how her seizures look.  She reminded me that Reagan's seizure activity is not focal - it's all over her brain.  If it were localized to the lesion where her surgery occurred then it would be less likely that she would come off medication because it's clear that the seizures are caused by the scar tissue.  Being more generalized, however, it's possible the brain will learn to remap the signals causing issues.  This doesn't seem logical to me since the brain has to remap so many different places….but I don't pretend to really understand synapses remapping. I am not holding my breath, though.  I was very hopeful last time she had the EEG and was crushed to find out that she was having them all over.  We will plan to schedule her EEG for April in order to be able to review the results at our next neurology appointment in 6 months.  This will also be two years from the last one.

Luckily we only have 3 more appointments this year (low vision second opinion, orthotics fitting, physical medicine).  The kids are excited about Halloween and the coming holidays.  We went to costume bingo last night at the kids' school and Cole begged another boy to borrow his mask. he finally looks like the Ironman we've been calling him for years!

To carry tradition, I like to share quotes from the kids.  One day this week Cole woke me in the morning and said, "mom, I don't think God is going to let me into Heaven." Deep conversation for a 5 year old to wake up to right?!  I tell my children that Heaven isn't a given….we need live in God's image to be accepted into Heaven.  I guess he took me very literally.  I told him that he is a good boy and that I'm sure God is happy with him.  Then he asked where you go if you don't get chosen for Heaven.  Yikes.  We talked about Hell and he wanted to know what it was like there.  Given his anxiety I was cautious with how much detail I shared.  But I ensured him it's not someplace he will want to visit.  He said, "If I'm a good boy and God will accept me in Heaven then why haven't I gone there yet?"  Another confusion that apparently I didn't explain well. But wow, what a thinker he is! I told him it wasn't his time yet after which he of course he asked why it was Kendall's time.  Another tough answer.  I never tell them she died because she was sick because I don't want them to think if they get sick they will die.  So I have historically told them she died because God chose her to come to Heaven and it was her time.  I totally understand his confusion and hopefully he was satisfied with the answers he received.  He is such a sweet boy who is so thoughtful.  I pray that I'm giving him the right guidance to understand this complicated world and after life.  I look forward to starting him in CCD (Catholicism classes) next year so I have support answering all these hard questions!

Wednesday, October 7, 2015

Day of Reflection and a visit to the Endocrinologist - FINALLY!

Wow, it was a busy day!  After Reagan left for school Cole and I went to the gym as we do every day
except Thursday (because I volunteer in Reagan's class).  I had 60 minutes of "quiet" time on the elliptical to think about my day five years ago today.  So after the gym I told Cole we should go to Starbuck's and remember Kendall by getting cake pops!  We've never bought them before so it was a fun treat and a good way to make new, happy memories.

I bought the recyclable butterfly coffee cup and after Cole finished his chocolate pop he asked when we were taking Kendall her pink one.  Sigh. When I told him we couldn't go to Heaven he said that was ok, but told me I couldn't eat it because that would make Kendall sad.  I tried to explain that we don't take our bodies to Heaven, that's we only have a spirit, but I honestly wasn't quite ready for that conversation.  When I started to cry at the thought of losing her, he said, "it's ok mom, she's in Heaven.  You don't need to be sad."

After Starbucks it was time to put Cole on the bus.  The house was desperately quiet and because I'm between contracts I had no work and didn't need to get the kids from school until 1pm (for the endo appointment).  I decided to head to Home Depot to pick up bulbs to plant in memory of Kendall.  The year she died my mom and dad helped me plant 200 Daffodils in our back woods.  Every Spring when they bloom it gives me such a warm feeling to think about her.  Unfortunately a pesky squirrel decided to steal a lot of my bulbs over the last few years so I decided it's time to add more (285 to be exact).

I want to share an interesting reflection with you as I was planting. Bear with me on the long winded build up…As I started digging holes my initial feelings were filled with joy - seeing the packaging and thinking about how beautiful these would look in the Spring. As I dug, the tears started rolling down my cheeks as I wished I didn't have to plant bulbs and wishing Kendall was part of our family here on Earth. I found myself hacking violently at the chunks of clay and the annoying grubs but realized it didn't really make me feel any better. It just fueled my anger. As I would I get another bag of bulbs I would see the flowers and remember that planting bulbs would bring Spring flowers. I felt joy again. And I marveled at how much this roller coaster of feelings reminded me of my journey through grief and healing. Good days. Bad days. Angry days. Sad days. And days that I just feel numb. Then I started thinking about all of my friends who have lost a twin (there are 31 women in my NOVA Multiples Loss Group). Then I found my energy renewed as I felt the need to plant bulbs for all of these angels. Then I looked closer at the package and saw the diagram of the bulb below ground and the flower rising above. Then it dawned on me…these bulbs are like our angels who have been buried and the flowers that will bloom in Spring are like our twin survivors. Beneath every flower is a bulb that is helping it grow and giving it life. Without it, there would be no flower.  For each bulb I planted I spoke the name of one of the angels I know who left this Earth too early. It was amazing how planting these bulbs helped me see the beauty that is to come as long as I am patient enough to wait until Spring.  I look forward to seeing all these flowers when they bloom.  And hopefully they will all make it through the winter!  It's a wonderful analogy that somehow spoke to me today...

After getting two thirds of the bulbs planted I had to get changed to pick up the kids early from school.  We headed East, fought stopped traffic on route 7 and did a U-Turn to take the toll road.  Luckily we were only 5 minutes late which was pretty luck given we sat in stopped traffic in Sterling for 20 minutes.  Our appointment with Dr. Mehra, Endocrinologist, went very well.  We discussed the symptoms Reagan is having, the results of the bone age test (which was normal) and the blood work (which was normal) and she said she isn't overly concerned.  She said her symptoms are considered Premature Adrenarche not Precocious Puberty (not uncommon amongst children with Cerebral Palsy).  Apparently that's a good thing.  Phew! She gave me a list of symptoms that would cause her concern and said unless we see those that we don't need any followup.  We have been waiting to see this doctor for 5 months so we are VERY happy to have this one checked off our list!  

We made it back to Sterling in time for Reagan to go to CCD (religious ed class), Cole to get to Tae Kwon Do, back to pick up Reagan, eat a quick dinner and get her to Tae Kwon Do class and then all home to bed.  We will wrap up our week of appointments with flu shots tomorrow.  Unfortunately Reagan's epilepsy/cerebral palsy requires her to get the shot instead of the mist so I get it too so she doesn't feel left out :-)  Other than two follow-up appointments for me in the next two weeks, we have no more doctor's appointments until the 19th and 21st!  Yahoo - almost like a vacation!  

On a separate note, I promised to start sharing quotes from the kids that make me laugh.  My favorite today was the first thing Cole said when he woke up today.  "Mom, am I still 5?"  Love that kid...